How AIDS Activists Used ‘Die-Ins’ to Demand Attention to the Growing Epidemic

How AIDS Activists Used ‘Die-Ins’ to Demand Attention to the Growing Epidemic

As the AIDS crisis took hold in the 1980s, killing thousands of Americans and ravaging gay communities, the deadly epidemic went unaddressed by U.S. public health agencies—and unacknowledged by President Ronald Reagan—for years. In response, a political group called ACT UP emerged, deciding it needed to do something shocking to draw attention to the crisis and jolt government agencies, drug companies and the mainstream media into action.

So it began organizing protest events where masses of people lay down in a public space, feigning death.

“The strongest thing we can do is something in silence,” declared writer, filmmaker and AIDS activist Robert Hilferty at a November 1989 meeting of ACT UP (AIDS Coalition to Unleash Power). “A die-in. A massive die-in.”

Founded in 1987, ACT UP ultimately organized thousands of protests, with die-ins becoming a signature tactic. And while AIDS activists weren’t the first to simulate death to call attention to lethal threats, the action became a powerful tool to show that, because the epidemic was being stigmatized and ignored, bodies were piling up. In ACT UP’s case, “they forced social and cultural institutions to take responsibility for the AIDS deaths by having to physically move the protesters’ bodies,” says Matt Brim, professor of queer studies at City University of New York.

READ MORE: How AIDS Remained an Unspoken—but Deadly—Epidemic for Years

The History of Die-Ins

The AIDS die-ins emerged from a longer history of activism that made bodies the focal point of protest, such as suffragettes chaining themselves to railings and civil rights activists staging sit-ins.

One of earliest known references to the term “die-in” came nearly two decades prior to ACT UP, when environmentalists demonstrated on Earth Day, 1970, in Boston, to raise awareness about the deadly impact of air pollution. About a month later, protesters in Seattle fell to the ground at a busy downtown intersection to oppose dangerous nerve gas shipments.

Since then, public die-in stunts have been used to decry everything from war and weapons testing to police violence and cycling deaths. To ratchet up the visual drama, some protesters have employed fake blood and bandages. Others brought coffins.

READ MORE: How the AIDS Quilt Allowed Millions to Memorialize the Epidemic

ACT UP: Fighting for Gay People’s Lives

When playwright and LGBTQ activist Larry Kramer took center stage at the New York Lesbian and Gay Community Services Center on March 10, 1987, and delivered the rousing speech that helped launch ACT UP, the epidemic had entered its sixth year. The U.S. government had yet to approve the prescription sale of a single drug to treat AIDS, and the deaths were largely being ignored by the media. “Unless we fight for our lives, we shall die,” Kramer wrote that month for the New York Native, a bi-weekly magazine aimed at the city’s gay community. As a result, ACT UP worked urgently to train as many individuals as possible in civil disobedience tactics. As an unidentified activist in the documentary United in Anger: A History of ACT UP put it, “you don’t always know when it’s going to happen or when you’ll want to do it.”

Die-ins became important for ACT UP, Michael Bronski, author of A Queer History of the United States for Young People and professor of practice in media and activism at Harvard University, told Our Site in an interview. That’s because “there’s a cultural hesitation to think about death—and the protest made it physical.”

And AIDS activists knew their best chance to affect policies was by affecting public opinion—making the media, rather than politicians or chief executives, die-ins’ primary targets. In United in Anger, an activist remembered how ACT UP clearly viewed civil disobediences, like die-ins, as a “safe tactic for making a stronger statement and as a way of getting media attention.”

READ MORE: History of Gay Rights

From Play-Acting Death to Conducting Public Funerals

In its first decade, ACT UP held thousands of demonstrations across the country and around the world. But not all die-ins focused on the same issue.

On October 11, 1988, ACT UP held its first national demonstration on the doorstep of the Food and Drug Administration, which activists perceived as slow to approve and release new drugs. In front of helmeted police officers guarding the building’s entrances, some activists staged a die-in, holding tombstone-cutouts that read, “DEAD FROM LACK OF DRUGS” and “VICTIM OF F.D.A. RED TAPE.” Less than a year later, the F.D.A approved one other drug and expanded access to another.

Outside the Centers for Disease Control in Georgia, die-ins targeted the narrow definition of AIDS that encompassed diseases observed in gay men, but not those specific to women and IV drug users. “C.D.C. is killing women, redefine AIDS,” activists chanted amid demonstrators sprawled on the sidewalk. In 1993, the C.D.C delivered AIDS activists a victory to their years-long campaign by adding CD4+ T-lymphocyte (T-cell) count to the definition, a count the C.D.C. viewed as having “clinical importance” in categorizing HIV-related conditions. The agency also added invasive cervical cancer to its list of AIDS-indicator diseases, an acknowledgement of the impact HIV was having on women.

Die-ins also occurred on Wall Street, targeting drug prices; at the vacation home of President George Bush, targeting national AIDS funding; at the National Institutes of Health; New York's Grand Central Station; and in Chicago and San Francisco, among other places and locations.

But in the fall of 1992, the theatrically of die-ins gave way to real artifacts of death.

On October 11, in a demonstration known as Ashes Action, activists gathered in Washington, D.C., some carrying the ashes and bone chips of loved ones who had died of AIDS to disperse over the White House lawn. Others carried corpses that rested in open-faced coffins.

Literally bringing real death to activism was the next logical thing to do, says Bronski. “It came out of frustration that things were not getting better quickly—or at all.”

READ MORE: The Pink Triangle: From Nazi Label to Symbol of Gay Pride

Die-Ins: Part of a Larger Strategy

ACT UP used civil disobedience, like die-ins, not only to vent frustration, but to strategically draw attention to its own proposals and presentations. In the United in Anger documentary, one of the group’s activists succinctly summed up the strategy: “When we get arrested, we usually are aiming to get a meeting set up or deliver a set of demands.”

“Any political movement has to be multifaceted, so that doing aggressive, in-your-face actions have to happen in tandem with people making arguments with politicians,” says Bronski.

Their aggressive actions at the F.D.A. and the C.D.C., for example, helped activists gain meetings that ultimately moved the needle on their pursuit of an AIDS cure.

“Before AIDS and before ACT UP, all experimental medical decisions were made by physicians,” Dr. Anthony Fauci of the National Institutes of Health told New Yorker magazine in 2002. “Larry [Kramer, founder of ACT UP], by assuring consumer input to the F.D.A., put us on the defensive at the N.I.H. He put Congress on the defensive over appropriations. ACT UP put medical treatment in the hands of the patients. And that is the way it ought to be.”

READ MORE: How Activists Plotted the First Gay Pride Parades

‘Die-Ins’ strategy of AIDS Activists to get Attention of Growing Epidemic

As the AIDS crisis took hold in the 1980s, killing thousands of Americans and ravaging gay communities, the deadly epidemic went unaddressed by U.S. public health agencies—and unacknowledged by President Ronald Reagan—for years. In response, a political group called ACT UP emerged, deciding it needed to do something shocking to draw attention to the crisis and jolt government agencies, drug companies and the mainstream media into action.

So it began organizing protest events where masses of people lay down in a public space, feigning death.

“The strongest thing we can do is something in silence,” declared writer, filmmaker and AIDS activist Robert Hilferty at a November 1989 meeting of ACT UP (AIDS Coalition to Unleash Power). “A die-in. A massive die-in.”

Founded in 1987, ACT UP ultimately organized thousands of protests, with die-ins becoming a signature tactic. And while AIDS activists weren’t the first to simulate death to call attention to lethal threats, the action became a powerful tool to show that, because the epidemic was being stigmatized and ignored, bodies were piling up. In ACT UP’s case, “they forced social and cultural institutions to take responsibility for the AIDS deaths by having to physically move the protesters’ bodies,” says Matt Brim, professor of queer studies at City University of New York.

The AIDS die-ins emerged from a longer history of activism that made bodies the focal point of protest, such as suffragettes chaining themselves to railings and civil rights activists staging sit-ins.

One of earliest known references to the term “die-in” came nearly two decades prior to ACT UP, when environmentalists demonstrated on Earth Day, 1970, in Boston, to raise awareness about the deadly impact of air pollution. About a month later, protesters in Seattle fell to the ground at a busy downtown intersection to oppose dangerous nerve gas shipments.

Since then, public die-in stunts have been used to decry everything from war and weapons testing to police violence and cycling deaths. To ratchet up the visual drama, some protesters have employed fake blood and bandages. Others brought coffins. …………………… …………………… Continue Reading. …………………………………………

FRONTLINE: AIDS in Black America

PBS recently aired Endgame: AIDS in Black America as part of its documentary series FRONTLINE. Viewers unaware of just how prevalent HIV and AIDS are in black communities may be shocked to learn that today half of new HIV cases in the United States, including two-thirds of those among women and 70% of those among youth, occur among African Americans, who make up only about 13% of the national population. These numbers are nothing new. As filmmaker Renata Simone makes clear, when doctors initially identified AIDS among gay men in 1981, they built a case definition for the new disease around the opportunistic infections presented by those first patients, inadvertently precluding many women, who suffered from different ailments, from receiving AIDS diagnoses. By the time that the Centers for Disease Control added female-specific infections to the case definition in 1993, the severity of the AIDS crisis among women had been undercounted for twelve years. Given that black women account for the majority of women with HIV and AIDS in the United States, the underrepresentation of women with AIDS led epidemiologists to underestimate the severity of the disease among African Americans as well. Moreover, as white gay men became the public face of AIDS in popular media accounts of the epidemic, many African Americans came to see the epidemic as one that would never affect them personally.

In Endgame, this sense of insulation from AIDS comes across most poignantly in the firsthand stories of women contracted HIV through unprotected sex with boyfriends or husbands who either did not know or did not disclose their own HIV positivity. However, Simone also gives voice to a wide range of experiences of AIDS among African Americans. Viewers hear from HIV positive gay men, a social worker illegally distributing clean syringes in Atlanta, young adults who contracted the virus in utero and now are coming of sexual age, as well as a host of public health experts, doctors, preachers, and activists.

Simone connects these individual stories to broader the broader social, cultural, and political forces driving the AIDS epidemic in black communities. For example, viewers see Alabama educators discuss their commitment to the state’s abstinence-only sexual health curriculum and then meet Marvalene, a young HIV-positive woman who explains that the textbook for her wellness class in high school showed only pictures of an African child and an emaciated white gay man in its discussion of AIDS. Viewers also hear from HIV-positive black gay men of different ages who trace their drug use and risky sexual choices to the various degrees of homophobic rejection they faced at home, school, and church. Failed education and homophobia represent only two nodes in a dense web of interrelated factors that underpins the racial disparity in HIV/AIDS in the United States, which Simone ably elucidates through interviews with longtime researchers and activists such as Robert Fullilove of Columbia University, Phill Wilson of the Black AIDS Institute, and Dázon Dixon Diallo of Sisterlove, Inc.

Putting the epidemic in historical context, Fullilove testifies to the economic dislocation that many black communities faced in the 1970s and 1980s, which fueled a growing drug trade as a source of income for black men who couldn’t find jobs in the licit economy. The explosion of crack in particular during the 1980s left many infected, as users (particularly women) hard up for a fix turned to sex work to satisfy their habits. Blaming crack for urban crime rates, lawmakers passed harsh sentencing laws for possession and distribution of the super-addictive drug, landing many black men in prison, where sex among inmates is common but condoms nearly absent. Upon release, they return to communities experiencing gender imbalance due to the disproportionate incarceration of black men, in which women feel disempowered when it comes to negotiating monogamy and safe sex, in part because there are so many fewer men than women. Two interviewees from late in the documentary hit the nail on the head. Dr. Lisa Fitzpatrick argues that the structural factors driving the epidemic demand structural solutions, while another interviewee describes AIDS as a “string” running through the fabric of black communities, highlighting the lingering racial inequalities in American society.

Both women are right, although like the statistics on AIDS in black America, their arguments are nothing new. For much of the epidemic, AIDS activists of color in particular have used AIDS as a means by which to draw attention to persistent issues of inequality in their communities, often putting issues like access to housing, education, and basic medical care at the forefront of their efforts. As Jennifer Brier has argued, they sometimes couched their work in an international context, advocating for global justice in the epidemic by addressing the structural inequalities faced by African Americans and people throughout the global south alike. As Bambi Gaddist of the South Carolina AIDS Coalition tells Simone (though in a different context), “I’m in Africa right now. As a state, I’m there. Sometimes, my staff feels like we’re there. Every time we test another young person positive, we’re there.”

Though Simone spends a great deal of time and care laying out the context for the disproportionate impact of AIDS on black America, in the film she gives very little attention to the political response of African Americans to the epidemic. In an early oral history for my own dissertation on the political culture of black AIDS activism, an informant lamented that to read what has been written on AIDS politics, one would think African Americans let the disease “steamroll over” their communities, and to some extent Endgame reinforces that myth. However, the supporting materials, including an excellent timeline, on the FRONTLINE website begin to flesh out that history of activism.

Also absent from Endgame are the voices of HIV-positive straight black men, save for Magic Johnson and the “bornies” who contracted the virus before birth. Otherwise, they appear (or rather do not appear) as duplicitous off-screen figures who fail to protect their female partners, or in the case of incarcerated men, as possible vectors of infection once they re-enter their home communities. Even the inmates who do appear on screen are shown speaking only to a doctor, who in turn addresses the camera in discussing their potential for spreading the epidemic further. Representations like this arguably do more harm than good. Making a serious dent in AIDS numbers means empowering everyone who is affected to openly talk and engage in safer sex, and that means straight men as well as women and gay men.

Altogether, Endgame is a thoughtful and emotionally powerful examination of AIDS among African Americans that does justice to the complexity of the epidemic and the challenges that lie ahead in the fight to stop it. It’s worth reiterating, however, that the disproportionate impact of AIDS on black communities–and black women in particular–is nothing new. Nevertheless, it seems as though almost every piece of reporting on HIV/AIDS among African Americans trumpets similar statistics as though they were some new revelation about the “changing face of AIDS.” Is this simply the persistence of the disease’s initial framing as “gay cancer,” as Simone suggests, or does it speak to a more pervasive inattention to the inequalities in American society that continue to drive the epidemic? The real endgame here seems to be that to real get to the heart of the problem, we need to address some very deep structural problems in the United States, and that kind of change doesn’t come easily.

Read more: Kenyon Farrow has a more critical review of Endgame on his personal site. Right after the documentary aired, Gawker put up cash to find out who gave HIV to Magic Johnson. Not to overuse a tired phrase, but if that’s the big question you took away from this film, you’re doing it wrong.

Note: A different version of this piece originally appeared at Ye Olde Royle Blog on 12 July 2012.

Encyclopedia of Greater Philadelphia

Philadelphians joined in the global movement to call attention to the AIDS crisis.

City Avenue, 1988

Demonstrators on the City Avenue boundary between Philadelphia and the western suburbs join in the radical turn of HIV/AIDS politics in the late 1980s.

ACT UP on Broad Street, 1991

n March 1987, a group of New York activists founded the inaugural chapter of the AIDS Coalition to Unleash Power (ACT UP), an organization whose protest actions became the public face of AIDS advocacy in the United States during the late 1980s and early 1990s. The group quickly spawned a network of chapters in cities across the country and abroad, including Philadelphia, South Jersey, and Delaware. This demonstration on Broad Street occurred during a visit to Philadelphia by President George H.W. Bush in 1991.

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AIDS and AIDS Activism

Doctors in Philadelphia diagnosed the first local case of what would later become known as AIDS (Acquired Immune Deficiency Syndrome) in September 1981, just months after the Centers for Disease Control first reported mysterious outbreaks of pneumocystis pneumonia and Kaposi’s sarcoma among gay men in New York and Los Angeles that marked the beginning of the recognized AIDS epidemic in the United States. Since pneumocystis pneumonia is rarely seen in healthy patients but common to those with weakened immune systems, and Kaposi’s sarcoma is a skin cancer otherwise seen among elderly Mediterranean men, the presence of these diseases in otherwise healthy young men signaled the potential for a serious public health crisis. Researchers later discovered the cause of AIDS to be the Human Immunodeficiency Virus (HIV), which replicates in the human body by killing cells that are vital to immune function, over time depressing the ability of the host body to fight off infections.

Although the number of new cases in New York City, Los Angeles, and San Francisco multiplied quickly over the first two years of the epidemic, at first the number of people with AIDS in Philadelphia rose slowly. Within the first year, only seven cases were reported locally, but by early 1983 trends in Philadelphia seemed to be catching up to the rapidly growing epidemic witnessed in New York and California. The disease also appeared in New Jersey, particularly in the urban corridors between Philadelphia and New York and between Philadelphia and Atlantic City, and in Delaware.

Philadelphians joined in the global movement to call attention to the AIDS crisis. (John J. Wilcox LGBT Archives of Philadelphia)

As gay men watched their friends and lovers die in increasing numbers, they organized in response. Philadelphia Community Health Alternatives (PCHA, later known as the Mazzoni Center), a health clinic founded in 1979 to serve the local lesbian and gay community, formed the Philadelphia AIDS Task Force to provide social services to those affected and offer information about AIDS and other sexually transmitted diseases through a local hotline. Meanwhile, social clubs like the Gay Men’s Chorus and Girlfriends Motorcycle Club joined forces to raise funds for PCHA’s education and prevention efforts.

Spread of AIDS

By the middle 1980s public health authorities recognized that the AIDS epidemic had grown beyond the communities of gay men in which doctors first identified the disease. Researchers in the United States and France had identified HIV as the cause of AIDS in 1983, and thus definitively determined that the disease could be transmitted through blood-to-blood contact, including needle-sharing among intravenous drug users, blood transfusions, and from an infected mother to her unborn child. At the same time, in cities around the country, reports showed the growing incidence of HIV and AIDS among African Americans and Latinos, particularly within networks of intravenous drug users and among their sexual partners and young children. Although those in this “second wave” of new cases had likely been infected for some time, their low access to medical care combined with the long latency period of HIV, during which time the virus spreads throughout a patient’s system but does not produce symptoms, to initially mask the prevalence of AIDS within communities of color.

In Philadelphia, by 1985 African Americans made up almost half of all reported AIDS cases, and the majority of cases among people under twenty five years old. David Fair, a longtime local gay activist and secretary-treasurer of a local predominantly black health care workers’ union, and Rashidah Hassan, a nurse who had worked with PCHA and its AIDS Task Force, became dissatisfied with the groups’ failure to effectively reach out to African Americans at risk of contracting HIV. To stem the rising tide of new infections in Philadelphia’s black community, in 1986 they founded Blacks Educating Blacks About Sexual Health Issues (BEBASHI), one of the nation’s first black AIDS service organizations. Perceiving that the AIDS Task Force’s efforts to reach out to the black community had been undercut by its reputation as an all-white organization, BEBASHI representatives worked through existing social institutions like African American churches so that their education and prevention messages that would resonate with black audiences. In New Jersey, Project IMPACT (Intensive Mobilization to Promote AIDS Awareness through Community-based Technologies) also reached out to African American leaders in urban areas.

Demonstrators on the City Avenue boundary between Philadelphia and the western suburbs, 1988. (John J. Wilcox LGBT Archives of Philadelphia)

In 1987, as the AIDS community nationwide became frustrated with the dearth of effective treatments and President Ronald Reagan’s reticence on the epidemic, grassroots AIDS politics took a radical turn. In March, a group of New York activists founded the inaugural chapter of the AIDS Coalition to Unleash Power (ACT UP), an organization whose protest actions became the public face of AIDS advocacy in the United States during the late 1980s and early 1990s. The group quickly spawned a network of chapters in cities across the country and abroad, including Philadelphia, South Jersey, and Delaware.

Dramatic Demonstrations

Members of the Philadelphia branch of ACT UP began staging theatrical “die-ins” and other dramatic demonstrations to highlight the human cost of high prescription drug prices and inadequate public health policy. To protest the Catholic Church’s opposition to condom use, in May 1991 around one hundred ACT UP Philadelphia members interrupted a prayer service for people with AIDS conducted by Archbishop Anthony Bevilacqua and tried to place wrapped condoms near his hands and feet, shouting, “These will save lives–your morals won’t.” In addition to public protests, ACT UP became well known for creating memorable visual messages to both educate people about AIDS and mobilize those affected by the epidemic. In this vein, during one holiday season the Philadelphia chapter circulated stickers featuring an HIV-positive Santa Claus with the tagline, “If only Reagan and Bush had told the truth, Santa wouldn’t have to die from AIDS.”

During the mid-1990s, ACT UP declined in national prominence as the white gay men who filled much of the organization’s ranks passed away, grew tired of activism, or gained access to the highly effective (but expensive) class of new antiretroviral drugs that became available due to advances in HIV treatment research. The Philadelphia chapter, however, remained vital due to the recruiting efforts of a core group of members, who reached out to lower-income people of color, among whom the nationwide AIDS epidemic continued to grow fastest. The changing membership in turn shaped the direction of the group’s activism, as it increasingly focused on affordable housing, HIV prevention in prisons, and access to medications for impoverished people in the United States and throughout the developing world. Working with Health GAP (Global Access Project), a coalition of AIDS activists and allied organizations, Philadelphia ACT UP members pressured the White House to move forward with a coordinated response to the worldwide AIDS pandemic. This effort, supported by numerous AIDS action groups in Philadelphia and the Cooper Early Intervention Program in Camden, culminated in 2003 with President George W. Bush’s announcement of the President’s Emergency Program for AIDS Relief (PEPFAR), a five-year, $15 billion commitment funding HIV prevention and drug access programs in Africa. In 2008, Congress reauthorized the program through 2013, and expanded its funding to almost $48 billion.

Four Decades

As the epidemic entered its fourth decade, the Philadelphia Department of Public Health estimated that 1.3% of the city’s population was living with HIV or AIDS, about three times the national average. Center City and the surrounding area had the greatest prevalence of cases in Philadelphia County, with additional areas of high concentration in the Northeast, West Philadelphia, and around Germantown. Despite the city’s relatively large percentage of people living with HIV and AIDS, local trends reflected patterns of infection for the United States as a whole, inasmuch as the epidemic in Philadelphia disproportionately affected African Americans, and in particular men who had sex with men and women, among whom the disease was growing fastest.

Regionally, statistics collected by the Centers for Disease Control from the beginning of the epidemic through 2008 showed New Jersey ranking fifth-highest in number AIDS diagnoses among the fifty states Pennsylvania ranking seventh and Delaware ranking thirty-third (although in rate of cases per thousand population, Delaware ranked eighth-highest in the nation). By 2010 Philadelphia accounted for the highest proportion of AIDS cases in Pennsylvania, surpassing other counties by far (20,411 diagnosed cases from 1980 to 2010, compared with 1,098 in Montgomery County, 1,743 in Delaware County, 802 in Bucks County, and 603 in Chester County). In South Jersey, by 2010 the disease was most prevalent in Atlantic County.

In light of these realities, activists reignited the search for an AIDS cure. In 2009 a group of veteran Philadelphia activists, many of whom had been part of ACT UP chapters around the country during the organization’s heyday, founded the AIDS Policy Project to advocate for funding and scientific research on treatments to not only slow the spread of HIV within a patient’s system, but eliminate it altogether. In this way, Philadelphians sought to lead the way to the end of the AIDS epidemic once and for all.

Dan Royles is a Ph.D. Candidate at Temple University. This essay is derived from his dissertation research on the political culture of African American AIDS activism.

Copyright 2012, University of Pennsylvania Press

Related Reading

Brier, Jennifer. Infectious Ideas: U.S. Political Responses to the AIDS Crisis. Chapel Hill: University of North Carolina Press, 2009.

Chambré, Susan M. Fighting for Our Lives: New York’s AIDS Community and the Politics of Disease. New Brunswick: Rutgers University Press, 2006.

Levenson, Jacob. The Secret Epidemic: the Story of AIDS and Black America. New York: Pantheon, 2004.

Smith, Raymond A. and Patricia D. Siplon. Drugs into Bodies: Global AIDS Treatment Activism. Westport, CT: Praeger, 2006.

City of Philadelphia, Department of Public Health, AIDS Activities Coordinating Office. Data and Research.


The AIDS Library and the Scott Wilds Papers, Special Collections Research Center, Temple University, Samuel L. Paley Library, 1210 Polett Walk, Philadelphia.

ACT-UP Philadelphia Collection and BEBASHI newsletter collection, John J. Wilcox LGBT Archives of Philadelphia, William Way Community Center, 1315 Spruce Street, Philadelphia.

Zaps make their mark

For most of its history, discrimination and anti-gay laws were the norm in the United States. Homosexuality was classified as a mental disorder, and before 1961, every state criminalized sodomy. The laws were used to justify sweeps of suspected gay bars and public parks, and LGBTQ people risked public humiliation, job loss, and even criminal prosecution for their homosexuality.

Some gay and lesbian groups that emerged during the 1950s and 1960s did publicly protest anti-LGBTQ discrimination. But though there were some riots and noisy confrontations during the era, protests were typically well-mannered demonstrations like the “Annual Reminder,” a yearly event at which protesters in business attire quietly picketed Philadelphia’s Independence Hall in an attempt to show gay men as orderly, contributing members of society.

Then came the June 28, 1969, Stonewall uprising. The riot, which broke out after police raided a gay bar in New York City, galvanized the LGBTQ community. Their frustrations about police entrapment and social stigma boiled over into the gay liberation movement. Groups coalesced around the country, and one of them, the Gay Activists Alliance (GAA), came up with a simple and extremely visible form of protest: zapping. (Find out how Stonewall sparked the modern LGBTQ rights movement.)

Credited to GAA member Marty Robinson, who became known as “Mr. Zap,” the organization’s first zaps were aimed at New York’s then-mayor, John Lindsay. Frustrated that the mayor had refused to meet with them and had avoided commenting on gay liberation, the group took action. From opening night of the Metropolitan Opera to the taping of a TV show, the group relentlessly interrupted his speeches, heckled him during live interviews, and sprinkled sites of his appearances with pamphlets.

“We decided that every time he appeared in public or every time that we could get to him, we would make life as personally uncomfortable for him as we could and remind him of the reason why,” recalled GAA member Arthur Evans in 2004. Lindsay eventually met with the group, but the zaps continued until he announced his support for a bill that prohibited discrimination against LGBTQ people in New York in 1971.

By then, activists had realized how powerful their zaps could be. In 1971, for example, the GAA and the Daughters of Bilitis, a lesbian group, targeted Fidelifacts, a New York-based company that performed background checks and was accused of investigating and targeting LGBTQ employees.

The company’s president had stated that his rule of thumb for identifying gay people was that “if it looks like a duck, walks like a duck, associates only with ducks and quacks like a duck, he is probably a duck.” Activists—one dressed in full duck regalia—marched in front of the building, squeaking rubber duckies and handing out flyers. Others tied up the company’s phone lines for an entire day, calling to say “Stop your offensive services now!”

How AIDS Activists Used ‘Die-Ins’ to Demand Attention to the Growing Epidemic - HISTORY

AIDS quarantine flyer Ephemera Collection (ACT UP/SF), GLBT Historical Society.

Try to imagine this through the lens of your COVID-19 experience.

Rumors are spreading that a new illness is infecting people like you. Perhaps it’s no more serious than a seasonal flu? First a patient in San Francisco, then a few more in Los Angeles, followed by a larger handful from New York and San Francisco. The disease is increasingly revealing itself to be deadly….

Unlike COVID-19, which is splashed across the 24-hour news cycle of the early 21st century, in the 1980s the silence from the media was deafening. In fact, the first article about this disease would not be published until nearly a year after the first reports—an article in a gay newspaper in New York, which proclaimed that the rumors of a new disease were an unfounded hoax.

ACT UP flyer Ephemera Collection (ACT UP/SF), GLBT Historical Society.

Tim Kingston, interviewed by Joey Plaster 2017 ACT UP Oral History Project, GLBT Historical Society. Video transcription coming soon.

Tim Kingston talks about the reciprocal relationship between ACT UP and Project Inform and ATN following a discussion of Compound Q and the desperate situation of People Living with AIDS when there were so few treatments available. Kingston was a journalist at The Bay Times during the ACT UP protests.

Project Inform was founded in 1985 by Martin Delaney and Joe Brewer. They wrote a foundational workbook, Strategies for Survival: A Gay Men’s Health Manual for the Age of AIDS. Delaney initially sought to educate the community on potential therapies, but promptly broadened his focus to include policy and advocacy work.

Delaney’s earliest advocacy work is chronicled in Jonathon Kwitney’s book Acceptable Risks. He pushed for policy reforms to allow for the importation of experimental drugs for personal use. He advocated for research into untested options by both urging the National Institutes of Health (NIH) to act and by funding and running a small community-based study of a controversial therapy, Compound Q.

Cover of book Strategies for Survival, courtesy of Brenda Lein

Image detail from the article “Daring To Stay Alive,” Bay Area Reporter, December 3, 1987 Ephemera Collection (PFLAG-PURP), GLBT Historical Society. Click image for full article.

"Project Inform: A History," 1990 Ephemera Collection (PFLAG-PURP), GLBT Historical Society.

Project Inform Ribavirin fact sheet, 1988 Ephemera Collection (PFLAG-PURP), GLBT Historical Society. Click image for full samples.

AIDS Treatment News pin-back button AIDS Treatment News Records Collection, UC San Francisco, Library, Special Collections, all rights reserved.

Buyers’ Clubs were used in the early days of AIDS to smuggle large amounts of non-FDA approved drugs into the United States and they were redistributed among club members. Some were "membership" driven clubs, where people paid monthly fees to have access to the club.

In San Francisco, the earliest underground access was through the "Guerilla Clinic" (1982) and later the Healing Alternative Foundation (HAF) was formed in 1987.

The buyers’ clubs served to galvanize a movement to consider and evaluate holistic and non-Western medical approaches. Buyers’ clubs also provided access to alternative therapies and holistic remedies, including micronutrients (e.g. vitamins) and other herbal or alternative therapies.

AZT/alternative therapies meeting flyer Ephemera Collection (ACT UP/SF), GLBT Historical Society.

Matt Sharp, interviewed by Joey Plaster, 2017 ACT UP Oral History Project, GLBT Historical Society. Video transcription coming soon.

Matt Sharp talks about Healing Alternatives Foundation, smuggling treatments across the border, Dennis Peron, "bathtub DDC," and a cease and desist order from the FDA. Sharp is a long-term HIV survivor and a founding member of ACT UP Golden Gate. He has a 30-year history monitoring treatment and research for HIV, advocating for ethical, speedy and comprehensive drug development and has participated in over a dozen clinical trials.

Cover of The Buyer's Club Newsletter, Volume 1, Number 1, Healing Alternatives Foundation Records, 1989 UC San Francisco Library, Special Collections, all rights reserved. Click on image for full document.

The Healing Alternative Foundation (HAF) opened in 1987.

It was as one of the first HIV buyers’ clubs in the nation. Although most therapies sold in the clubs failed to halt the course of the disease or provide effective relief, the clubs served to galvanize the resolve of the community not merely to nurture and support people as they died, but also to nurture and support people to fight for their lives.

"Legalize Marijuana" on the Corner of Castro and Market Streets, 1984 photograph by Max Kirkeberg, Max Kirkeberg Collections, DIVA, San Francisco State University, all rights reserved.

Buyers’ clubs paved the way for “medical marijuana” clubs.
Marijuana advocates first framed legalization and access as an AIDS issue. Mary Jane Rathbun, popularly known as “Brownie Mary,” was a volunteer at San Francisco General Hospital’s AIDS Ward. She baked and distributed marijuana brownies to patients.

Brownie Mary worked closely with Denis Peron, a leading medical-marijuana advocate, to legalize medical marijuana in California. She helped to establish the San Francisco Cannabis Buyers’ Club—the first in the country. Donald Abrams, a prominent oncologist and AIDS researcher in San Francisco, compiled some of the earliest studies of marijuana as a treatment for HIV-related conditions.

The AIDS Health Project button Art and Artifacts Collection, GLBT Historical Society.

Universal Healthcare for the AIDS crisis button Art and Artifacts Collection, GLBT Historical Society.

Compound Q is likely the most infamous underground therapy.

An extract from the root of a Chinese cucumber plant, it was administered intravenously and had serious side effects at least one death is attributed to the drug.

The government research establishment was failing the community, so the community took matters into its own hands. Research on HIV/AIDS proved more difficult than expected—slower, cumbersome and complicated.

Project Inform conducted a study of the first Compound Q trials in the late 1980s, drawing national media interest. While studies failed to show benefit, the process of setting up a study, dealing with the intricacies of drug acquisition, study design, statistical evaluation and review gave activists an important lesson in the drug-research and development process. They developed tools to critique and analyze scientific work, and began to identify shortcomings that doctors and scientists closely involved in the process were missing.

Cover page of “Compound Q Clinical Protocol”, 1990 Project Inform (2000-59), GLBT Historical Society.

DNCB, a sensitizing agent, created a reaction similar to poison oak when applied topically some reactions were severe. Billi Goldberg, a DNCB advocate, contended that it would help the body fight HIV.

Project Inform sponsored a study of DNCB that did not yield impressive results. This remedy and its proponents became a point of divisive community contention, as DNCB proponents aggressively marketed the drug, in spite of the lukewarm data and troubling side effects. The situation resembles the ongoing controversy regarding the use of hydroxychloroquine as a treatment for COVID-19.

Cover page of DNCB Clinical Protocol booklet, Project Inform National Task Force on AIDS Prevention Records (2000-59), GLBT Historical Society.

DNCB Clinical Protocol booklet, Project Inform National Task Force on AIDS Prevention Records (2000-59), GLBT Historical Society. Click on image for complete text (2 pages).

What began with a few individuals taking risks to bring experimental and untested treatments to their loved ones and community would ultimately blossom into a movement that democratized the scientific process and forever changed biomedical research.

This shift occurred gradually, as activists began to advocate for both government- and industry-sponsored research into AIDS. It began with knocking on doors with questions and a sense of urgency. Over time, activists would succeed in bringing the voice and experiences of the community to the design of research and the setting of research priorities.

AIDS buttons Art and Artifacts Collection, GLBT Historical Society.

Terry Beswick, interviewed by Joey Plaster 2017 ACT UP Oral History Project, GLBT Historical Society. Video transcription coming soon.

Terry Beswick talks about gaining a seat at the table through activism, the legacy of TAG and Martin Delaney, and changing the minds of "antagonists" such as Anthony Fauci. Beswick says of AIDS activism: "a grand experiment that saved a lot of lives."

At the height of the HIV/AIDS epidemic in San Francisco, he was a founding member of the local ACT UP and was the first national coordinator of ACT NOW, the national AIDS activist network. He advocated for HIV/AIDS research and treatment with Project Inform, the Human Rights Campaign and the White House Office of HIV/AIDS Policy.

Finding a seat at the table, and sometimes creating the table, the treatment-activist community became involved with every level of basic, clinical and drug-development HIV research.
In addition to grassroots efforts that successfully lobbied for massive increases in research funding, AIDS treatment activists participated in strategic planning helped set research priorities reviewed grants and initiatives engaged as team members for developing both government and industry-sponsored programs and studies reviewed data and participated in FDA advisory panels regarding the development and approval of new HIV drugs and diagnostic tools and created forums for innovative and out-of-the-box thinking on AIDS research.

Because of their unique position with access to bleeding-edge information, activists launched national educational programs to disseminate information to patients and providers. In the days before the internet, this was accomplished predominantly through Project Inform’s National HIV/AIDS Treatment Information Hotline and a national community town meeting program.

Cover page of “Parallel Track: What it is, why we need it, where it is and why we should be pissed that we don't have it already” handout Ephemera Collection (ACT UP/SF), GLBT Historical Society. Click on the image for full document.

Community Forum flyer (with AAP and AIDS/ARC Vigil, 1988 Ephemera Collection (ACT UP/SF), GLBT Historical Society.

After a time, it was clear that real progress was going to require partnerships with researchers, government agencies, industry and public and private funders.
Pharmacies had nothing to offer, so the community created its own sources for therapies. The media remained silent, so the community created its own information networks. The research establishment failed, so the community began its own research projects.

When one person learned something new about research or the drug development process, they taught others.
Groups like the AIDS Coalition to Unleash Power (ACT UP) held weekly meetings to share what they learned and get input on ideas to move research along toward a cure. These were not scientists and doctors. These were businessmen and women, waiters, hotel workers, retail sales clerks, bartenders, artists, dancers and writers.

While physicians, researchers and activists were familiar with the needs of their local communities, the Bay Area activists were interacting with people in incredibly diverse communities, across the country, on a daily basis.

When the government lagged in providing guidance for the use of approved anti-HIV therapies, Project Inform stepped in and developed the first set of guidelines to assist patients and providers in navigating the complexities of treatment decision-making and in understanding HIV drug resistance and interactions.

Northern California treatment activists had access to a national constituent base, both largely through the programs of Project Inform and ACT UP’s agenda, and translated their concerns into advocacy and education priorities. As a result, broad-based constituent concerns drove nearly every aspect of all their activist efforts.

Cover of Project Inform's "Advocacy Positions for 1990 and Beyond," 1990 Ephemera Collection (PFLAG-PURP), GLBT Historical Society.

Policy groups sprang up to lobby for increased funding for AIDS prevention, care, treatment and research. These included Mobilization Against AIDS, the San Francisco AIDS Foundation, Life Lobby (a coalition of California state lobbyists working on LGBTQ and AIDS issues), the National Task Force and Project Inform, including its grassroots-lobbying effort, the Treatment Action Network.

While some of these policy efforts were not treatment-research specific, Project Inform and ACT UP were the champions of that unique component. Both of these groups issued calls for a coordinated effort for a cure, a “Manhattan Project” on AIDS. ACT UP’s was largely directed from New York and was called the “AIDS Cure Act.” Project Inform’s initiative was coordinated by its policy director, Anne Donnelly, and called “The Madison Project.”

Project Inform group marching in the 1988 San Francisco Lesbian and Gay Freedom Day Parade AIDS Treatment News Records Collection, UC San Francisco Library, Special Collections, all rights reserved.

"Mobilization Against AIDS" sign, 1994 photograph by Max Kirkeberg, Max Kirkeberg Collections, DIVA, San Francisco State University, all rights reserved.

Cover of Mobilization Against AIDS History, 1991 Mobilization Against AIDS Records Collection, UC San Francisco Library, Special Collections, all rights reserved. Click on image for full document.

Mobilization Against Aids buttons Art and Artifacts Collection, GLBT Historical Society.

ACT UP Golden Gate newcomer's information packet, selected page Ephemera Collection (ACT UP/SF) GLBT Historical Society. Click on the image for full packet.

Knowledge became power and that power became the force behind a quiet revolution. Some attribute the noisy and colorful street theatre of street-activist protestors with helping to open doors, and certainly it played a role, but there were people making change “at the table” before, during and after the rise of AIDS street activism.

The major local players included the staff and volunteers at Project Inform and the treatment activists, most of whom went on to form ACT UP/Golden Gate (later known as “Survive AIDS.”)

Across the country, Bay Area treatment activists spearheaded the charge on advocacy on immune-based therapies, advanced stage disease and “cure” research.

The ACT UP/NY Treatment and Data Committee launched the “Countdown 18 Months Plan” in December 1990 to focus research attention on AIDS-related conditions, and activists everywhere participated in anti-HIV drug activism. The plan consisted of a set of scientific procedures and demands designed to implement treatment and research for controlling the five currently most devastating opportunistic infections (cytomegalovirus, histoplasmosis, pneumocystis carnii, toxoplasmosis and mycobacterium avium complex).

ACT UP/Golden Gate members Jesse Dobson and Brenda Lein crafted a proposal for “Project Immune Restoration” for Martin Delaney, who embraced the idea wholly under the auspices of Project Inform. Dobson directed the program as a volunteer, leading a world renowned think tank called the Immune Restoration Think Tank: The Dobson Project. Lein went on to direct Project Inform’s Information and Advocacy departments, taking over leadership of Project Immune Restoration after Dobson’s death in 1993.

Immune Restoration Think Tank conference, 1999 photograph courtesy of Brenda Lein.

Jesse C. Dobson (1957–1993), AIDS treatment advocate photograph courtesy of Brenda Lein.

A number of studies emerged as a result of Project Inform’s Immune Restoration Think Tank, including the infamous baboon-to-human bone-marrow transplant.

The study attempted to test the safety and feasibility of transplanting baboon cells, which naturally resisted HIV infection, into a human with AIDS, with the hopes of repopulating a human with functioning, HIV-resistant cells.

ACT UP/Golden Gate member Jeff Getty made major media headlines as the bone-marrow recipient. His physician researcher, Steve Deeks, went on to become a leader in clinical AIDS research, and continues to chart new territories in research for an AIDS cure.

Project Inform's "Immune Restoration Think Tank: The Dobson Project" conference binder, 1999 courtesy of Brenda Lein.

Growing out of both the Project Inform Immune Restoration Think Tank and several other cure-research think tanks, and incorporating components of the Madison Project recommendations, a funding initiative for a multimillion-dollar, bench-to-bedside AIDS cure research effort was launched in 2009 by the U.S. government.

The initiative, the Martin Delaney Collaboratories for HIV-1 Cure Research, is named after Project Inform’s founder. There are several funded collaboratories, now augmented by privately funded projects through the Foundation for AIDS Research.

ACT UP benefit flyer, 1993 Ephemera Collection (ACT UP/SF), GLBT Historical Society.

Treatment activists began emerging in both likely and unlikely places.

It was not unusual for a physician working in a specific research or treatment field to become an activist for that field and their patients, but it was unusual for them to start attending ACT UP meetings and partner with the LGBTQ community in more direct ways.

ACT UP/Golden Gate broke ground on solid-organ transplants for people living with HIV. As people with HIV lived longer, they began dying of comorbidities, including liver failure due to HIV or hepatitis. An HIV diagnosis excluded a patient from qualifying as a candidate for organ transplant.

A former ACT UP treatment activist turned physician researcher, Michelle Roland, worked with the University of California San Francisco (UCSF) transplant team to write the first protocol for solid-organ transplantation. Activist Jeff Getty and his ACT UP/Golden Gate colleagues led the way to secure funding from the state for a pilot project for solid-organ transplantation in HIV+ people, and advocated for removing procedural barriers.

ACT UP flyer Ephemera Collection (ACT UP/SF), GLBT Historical Society.

T-Cells on Drugs poster, used for the advocacy efforts leading to AIDS Drug Assistance Program expansion courtesy of Brenda Lein.

The ACT UP/Golden Gate activists were among the first to engage in AIDS Drug Assistance Program reforms, a program established initially as the “AZT Availability Program.” This program served the uninsured and underinsured by providing access to therapies to manage HIV disease.

Jesse Dobson, Todd Kooyers and Brenda Lein, along with their ACT UP/Golden Gate colleagues, worked together to design and implement reforms that led to an expansion of the program from two drugs to over 100 therapies, an increase in funding for the program and the creation of a Medical Advisory Board. The Board, which included patient representatives, reviewed the formulary and suggested many other reforms to remove barriers to accessing therapies through the Drug Assistance Program.

Initially they were met with pessimism from local San Francisco health officials, who claimed that it was impossible to change the system and add even two drugs. Yet within a year even the city‘s mayor and members of the board of supervisors were celebrating their success.

ACT UP flyer Ephemera Collection (ACT UP/SF), GLBT Historical Society.

Through powerful graphics, demonstrations, street theater and “affinity actions,” AIDS activists put on attention-grabbing spectacles to garner media attention. An “Affinity Action” is an action by a small group of individuals who come together to undertake an action in solidarity with, but not formally associated with or coordiated by, a larger parent group, often to limit potential legal consequences.

They quickly learned that the greater numbers arrested at a demonstration, the more likely and the better the press coverage. Activists used demonstrations to maintain media interest in AIDS issues, spotlight breaking news and shed light on emergent issues. They also deployed them as leverage in stymied negotiations between the community and industry and/or government representatives.

Rarely, perhaps never, did street actions take place without a coordinated plan, strategies, demands and a clear goal. Entire committees dedicated themselves to cultivating media contacts, planning demonstrations, designing creative artwork and catchy slogans, and developing street theater repertoires. These demonstrations created a space for people with varying interests and talents to come together and express their rage, grief and solidarity.

ACT UP/Golden Gate stickers, ca. 1990s Ephemera Collection (ACT UP/Golden Gate), GLBT Historical Society.

ACT UP/Golden Gate sticker, ca. 1990s Ephemera Collection (ACT UP/Golden Gate), GLBT Historical Society.

Leather-clad kids in Doc Martins poured into the streets and demanded to be heard. They stopped traffic, held “die-ins” and refused to be silent. Their brazen acts of defiance against a complacent system were backed by articulate and well-researched messages and demands for change. Powerful images of young LGBTQ people with their fists raised—militant, irreverent and strong—reinvented the county’s idea of what queer people “looked” like and underlined the resilience and strength of the community.

Of course, these actions were controversial. Stopping traffic is inconvenient, shouting down speakers at conferences isn’t polite, and time and again, the media quoted bystanders who made remarks such as, “I understand what they’re saying, but I think they are working against themselves with these tactics.”

Postcard of the Golden Gate Bridge Blockade, 1989 photograph by Rick Gerharter, Ephemera Collection (State-Stop), GLBT Historical Society.

AIDS button Art and Artifacts Collection, GLBT Historical Society.

History has revealed, time and again, that asking for things nicely does not always lead to the same results as direct action.
ACT UP and Survive AIDS became a galvanizing force of strength in the Bay Area’s LGBTQ community. Increasingly, those being arrested weren’t just punk-mohawked kids businesspeople, doctors and lawyers in suits appeared, standing in solidarity.

A doctor might show up to a meeting, planning to share knowledge with the group, only to be awed by a brain trust of scrappy kids from all walks of life who proceeded to school him on the drug-development process and the barriers to accelerating the pace of biomedical research. To the outside world, the activists may have appeared intimidating, but they were kids trying to stay alive and doing whatever they could to keep their friends alive too. The streets were a blank canvas for direct action and change.

Stop AIDS Now or Else button Art and Artifacts Collection, GLBT Historical Society.

The Split
The AIDS Coalition to Unleash Power, known as ACT UP, formed in 1987 at the Lesbian and Gay Community Services Center in New York. In San Francisco, ACT UP grew out of already established organizations, most notably AIDS Action Pledge. In 1990, after a growth spurt in the wake of the Sixth International AIDS Conference held in San Francisco that year, tensions rose within ACT UP/San Francisco. It split into two chapters, ACT UP/San Francisco and ACT UP/Golden Gate.

Even those involved characterized the reasons for the split differently, but the major disagreement centered on the decision-making process: one group insisted on consensus, while the other preferred a large majority vote. ACT UP/San Francisco could not abandon its decision-making process without consensus, and could not reach consensus to change the decision-making process, so those advocating for majority-vote decision-making formed a new group, ACT UP/Golden Gate.

The two groups continued to work together for several years on overlapping issues, but by 1994, ACT UP/San Francisco had largely been taken over by fringe AIDS denialists and profiteers. ACT UP/Golden Gate maintained a focus on treatment-research and access activism. In 2000, ACT UP/Golden Gate changed its name to “Survive AIDS” to further distance itself from ACT UP/San Francisco.

ACT UP/Golden Gate statement of purpose Ephemera Collection (ACT UP/SF), GLBT Historical Society.

A Capsule History of ACT UP/San Francisco Ephemera Collection (ACT UP/SF), GLBT Historical Society. Click image for full document.

ACT UP flyer on access to Clarithromycin for MAI, Ephemera Collection (ACT UP/SF), GLBT Historical Society.

ACT UP flyer Ephemera Collection (ACT UP/SF), GLBT Historical Society.

Target Abbott Labs at the San Francisco Stock Exchange
Most of the AIDS therapies being developed focused on antiviral strategies to suppress the virus, not rebuilding the immune system ravaged by the disease. But this latter strategy—immune therapies—was a major focus of Bay Area treatment activism. Abbott Laboratories had a license to develop this approach, called HIVIG (HIV immune globulin), which involved transferring potentially potent antibodies from healthy, HIV-positive people to people in more advanced stages of the disease.

San Francisco activists advocated testing this procedure in both adult AIDS patients as well as in HIV-positive pregnant woman, in the hope of preventing HIV transmission from mother to child. Abbott wasn’t interested in researching this treatment, which meant it would languish “on the shelf.” To pressure Abbott to release the product for research—or sell it to another company willing to develop it—activists held a demonstration at the San Francisco Stock Exchange on July 16, 1992, encouraging stockholders to sell Abbott stock.

An “affinity group” of activists dressed up and had scheduled stock exchange tours for that day, while the street protestors organized outside. In a moment of well-orchestrated chaos, three activists made their way to the stock exchange floor. One, Michael Lauro, released helium balloons attached to a drop-down banner reading “Sell Abbott Stock.” The banner rose to the ceiling while activist tour attendees chanted slogans and rained colorful flyers onto the unsuspecting stock traders. Two other activists had made their way to the middle of the stock-trading floor, where they tossed flyers through the crowd of brokers, all while the street demonstration continued outside.

This was the first, and perhaps only time that activists disrupted trading on the floor of the Pacific Stock Exchange. It proved to be a tipping point for Abbott, which initiated negotiations in late 1992 to sell the product to NABI, a pharmaceutical company committed to further developing the therapy.

Brenda Lein, interviewed by Joey Plaster, 2017 ACT UP Oral History Project, GLBT Historical Society. Video transcription coming soon.

Brenda Lein talks about direct action, as exemplified by the Abbott Labs action at the Pacific Stock Exchange (with mentions of Michael Lauro and G'Dali Braverman), including the use of arrests to get the attention of the media and the need to be honest when treatments don't work out. Lein served as a member of ACT UP San Francisco and was a founding member of ACT UP Golden Gate.

World AIDS Day 2019: Mobilizing and Empowering Communities to Achieve an AIDS-Free Future

I’ve always firmly believed that a small action by an individual can have a reverberating effect. A few words of support could create a huge shift in a person’s day or week and advice you give a friend in passing could change their mindset. When I first heard that the United Nations’ theme for World AIDS Day 2019 was “Communities make the difference,” I reflected on the history of the AIDS epidemic and how passionate individuals were able to create a better future. The progress that’s been seen in treatment and awareness could not have happened without people living with HIV and their allies fighting for a seat at the table.

The documentary How To Survive A Plague chronicles how AIDS activists used unapologetic tactics to get attention, and then used those confrontations to offer new policies rooted in the knowledge of what their community needed. During the 1980s, thousands of people had already died from AIDS, but the crisis was still being ignored by both the Reagan administration and medical bureaucracies. In 1987, people living with HIV/AIDS came together to form ACT UP, or the AIDS Coalition to Unleash Power. Soon after its founding, ACT UP held “die-ins” on Wall Street, New York’s City Hall, and in front of the Food and Drug Administration (FDA). These activists literally put their bodies on the line to demand respect and access to treatment… And it paid off. After ACT UP protested in front of the FDA, activists met with government officials. Soon after that, the FDA announced a shortening in the drug approval process and increased access to experimental drugs.

David France, the creator of How to Survive a Plague, has said that ACT UP’s members united in anger towards how they were treated. By channeling their anger into action, activists like the ones who formed ACT UP changed patient advocacy. No longer were people living with HIV forced to the side. Instead, progress was led by those it would affect most. AIDS activists of the past and present serve as examples of the good that can come from passionate individuals coming together.

Today, the Pediatric AIDS Coalition at UCLA (PAC) strives to embody the courage and tenacity of early activists and help continue the advocacy they started. PAC’s theme for the 2019-2020 year is ‘Unite.’ We chose this theme as a reminder that only by uniting diverse communities can we break the stigma of HIV/AIDS and create an AIDS-free generation. When we raise money for our beneficiaries, we hope to support them in their mission to provide strong communities to those living with and affected by HIV and AIDS. Ultimately, PAC aims to empower individuals living with HIV by empowering the communities around them.

We work closely with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), which works with local organizations across the globe to give resources to existing health structures, community health workers and women and children living with HIV/AIDS. EGPAF trains health workers to provide HIV counseling and testing, sustain support groups in the community, and check up on other women to make sure they are following treatment plans. The Laurel Foundation, another one of our beneficiaries, provides safe spaces for kids affected by HIV through camps, workshops, and community events. Additionally, PAC’s direct mentorship programs organizes retreats and events with many of the campers at the Laurel Foundation, such as the Life Skills Retreat held every President’s Day Weekend. At these retreats, kids can choose to talk about their experiences with adversity or not, but regardless are surrounded by an understanding and caring community.

Now that I’ve shared a few of the ways our beneficiaries empower others, you might wonder how you can advocate for those living with and affected by HIV in your own communities. I asked myself the same question a few years ago. Personally, PAC has helped me speak up for the things I care about. A few months ago, one of my close friends made an uneducated joke about AIDS, comparing it to something negative. I knew that some discomfort was worth it to educate him and change the narrative. So, I spoke up and changed the conversation to why my friend shouldn’t tell jokes at the expense of other people, about something he didn’t yet understand. I told him that he can’t know whether his words would affect someone’s self-esteem or perpetuate a harmful stigma. That small incident reminded me that even though it’s usually easier to stay quiet, every moment you choose to speak up for something you care about matters. Today, take a moment to think about the ways you impact those in your communities, and the ways your communities make a positive impact on the world. On this year’s World AIDS Day, and every day of the year, be an advocate and unite others in the common goal we all share – creating a generation free of HIV, AIDS, and stigma.

David Wojnarowicz was one of the presiding geniuses of a post-Stonewall era in which queers refused to be shut up

Olivia Laing’s The Lonely City (2016) is a good account of what was lost in New York during the plague years: a strange, chimerical, and life-changing book. Among many others, she focuses on artists like Andy Warhol and David Wojnarowicz, and describes how the Aids crisis nearly extinguished the defiant, polyvalent weirdness that erupted at Stonewall. There is a famous 1987 image of Wojnarowicz with his lips sewn shut. He died of Aids in 1992. He was one of the presiding geniuses of a post-Stonewall era in which queers refused to be shut up.

Activists protested in 2010 when a work by David Wojnarowicz was pulled from a show after the Catholic League and members of Congress complained that the piece was sacrilegious

Film-makers responded to the crisis with their own defiant weirdness: Jennie Livingston documented the African-American, Latino, gay, and transgender communities involved in the ball culture of New York City during the mid-to-late 1980s in Paris is Burning (1990), while Rosa von Praunheim’s hard-hitting 1990 film Silence = Death explored the response of New York City artists to the Aids epidemic, interviewing Wojnarowicz, poet Allen Ginsberg and graffiti artist Keith Haring, who died of Aids three months before the film was released. It was a very different time from the Stonewall era, but some of that anarchy was still there.

The Moroccan-born French director and screenwriter Robin Campillo drew on his own experiences of the militant Aids activist group Act Up Paris in his 2017 film 120 Beats Per Minute. He described their struggle in the late 80s and early 90s to get Aids publicly acknowledged, and how that willingness to disrupt the status quo – seeded in the Stonewall riots – informed his film work: “When you change the point of view, you change cinema.”

Robin Campillo’s 2017 film 120 Beats Per Minute looks at the early years of the Aids activist group Act Up Paris (Credit: Alamy)

Yet the Aids epidemic silenced many. Sarah Schulman’s polemic The Gentrification of the Mind (2012) argues that the post-Stonewall spirit of optimism was crushed by the Aids crisis, which annihilated whole queer communities. In the wake of that, she claims, queers fell back in shock into mainstream respectability and tactical invisibility.

The force of the slapping-down that the Aids ‘plague’ years delivered to the queer community in the wake of Stonewall cannot be underestimated. To date, around 675,000 people have died of Aids in America. Imagine thousands of people in your immediate community dying a horrible death and disappearing each year. Their possessions, as Schulman recounts, filling up dumpsters, as their apartments were bought up and gentrified. “In Act Up, we used to say our address books were cemeteries,” says Campillo. “We were in a zone where people were not dead or alive when I looked at my friends, I was thinking they were already a little bit dead.”

Family albums

On anniversaries such as this, it is customary to get together with friends and family, knock back a few drinks, talk about the good old, bad old days, and maybe treat your captive audience to a slideshow that punctuates the decades with embarrassing highlights. And there are two handsome family albums, We Are Everywhere, by Riemer and Brown, and Todd’s Pride, both published to mark this big queer rebirthday.

As I flip through the former – the queer family tree I have never had, until now – my eyes fill with sentimental tears as I regard distant relatives in grainy photos from the beginning of the 20th Century holding hands or attending queer gatherings.

Grace Miller and friends at a bar in San Francisco, 1953 (Credit: San Francisco History Center, San Francisco Public Library)

Look here: a photo of my Great Aunt Grace out on the town in San Francisco with some lesbian friends in 1953, radiating sexy charisma and joy. I see Jiro Onuma, my Great Uncle, once removed (to a concentration camp in California, during World War Two) hanging out together with gay buddies in the early 1940s, their dignity undimmed, a guard tower rising like a phallus in the background.

Three gay men by guard tower, Tule Lake concentration (relocation) camp, California, early 1940s (Courtesy of the Gay, Lesbian, Bisexual, Transgender Historical Society)

How full of life my long-lost cousins look, in a photo taken outside the Stonewall Inn in June 1968, a year before the riots. They are bursting with barely contained life maybe they have never been more alive. And here’s a photo of my mother, the legendary transgender activist Marsha P Johnson (credited by some as throwing the first brick or glass at the Stonewall riots – although she claimed not to have arrived until the rioting had started), posing with a friend during Liberation Day, NYC, 1969. Mum, I’ll never forget you.

Marsha P Johnson and friend, Christopher Street Liberation Day, NYC, 1976 (Credit: Biscayne/Kim Peterson)

Todd’s album has many similar cosy moments, such as an image of the first rainbow flag, flown in San Francisco in 1978. But the image I find most moving is a 1987 UK Conservative Party general election advertisement that shows anarchist lefties, feminists, and anti-nuke protestors, as well as young men carrying the ‘Gay Lib’ sign. “Labour Camp,” the caption reads “Do you want to live in it?” – suggesting Britain is heading for a sort of reverse concentration camp, where freedom is rampant, and civilisation crumbles. For the flavour of the time, check out the storming disco record Two Tribes by Frankie Goes to Hollywood, a British group with what might be termed an overtly queer aesthetic.

None of the people commemorated in these books are my real family. But at times people like them have been the only family I had. I have been to many places like the Stonewall Inn, and they haven’t preserved my sanity, exactly more that they’ve helped me construct a new one. One of my other trans mums, Sylvia Rivera, suggested in her talk about the Stonewall riots that we queers can “never be like them” that if we long for normality we “are forgetting [our] own individual identity”. She called young queers “my children”. She believed that assimilation to heterosexual society, if it were even possible, would demand that we hide not just from heterosexual society, but also from ourselves. As the great poet (lesbian, African American woman, feminist, civil rights activist, mother) Audre Lorde said, “your silence will not protect you”.

Queer activist pinback button, c 1990 (Collection of Matthew Riemer & Leighton Brown)

Looking back over the 50 years since Stonewall, we face a deep political and philosophical question: are we now winning the struggle for equality by pretending to be heterosexual, by occulting who we are (as sexual beings) and reflecting back to straight people what they want to see (ie themselves)? Does ‘equal’ mean ‘less’? Schulman is unequivocal: she calls the move toward mainstream acceptance ‘gentrification’ in a larger sense, and asks how we got here, “To a place where homosexuality loses its own transformative potential and strives instead to be banal.”

Silence is golden?

Attempting to move ‘out’ into the commercial mainstream and coat everything in ‘pride’ hasn’t helped us to eliminate our shame. Perhaps we are moving in the wrong direction, toward isolation and away from the political collectivism that once sustained us? The writer Frank Browning told me that he thinks of Stonewall as “the cry for liberation of our ‘inner’ innate selves as queers”. To his mind, however, “desire is only and no more than our eagerness to be part of the world: sex, love, fear, compulsions, dreams, will. In short, the absolute opposite of ‘essentialism’.” Since the Stonewall and Aids crisis points, the queer community has been beset by a depoliticisation that has resulted in sexual repression. Think of the US comedy Will & Grace, which ran for 10 seasons. Queer triumph? Or just gayness hollowed out of its sexual aspects to make it acceptable?

Perhaps it is time for queers to double back and look again at liberating our sexuality, the uncontrollable parts of us that exploded at Stonewall. Edmund White has always disrupted attempts to construct him as a vanilla, patrician writer, to turn him into a heterosexual mascot, by openly talking about his unbridled sexuality alongside his work. Garth Greenwell, a younger-generation writer whose What Belongs to You (2016) was widely acclaimed as a masterpiece, takes us cruising in a public toilet, where we fall in love with a male prostitute. The book makes no apologies: it embraces the prostitute Mitko as it embraces queer desire.

Followers of the gay Irish playwright Oscar Wilde (pictured) wore carnations in their lapels (Credit: Alamy)

Roman and American Slavery

The word Nigger, extremely offensive to some, but to others a word of power and lifestyle. We all know that words can have a negative effect on individuals as well as a society as a whole. ‘Nigger’ is no different. A racist word that should not be used by the black community.

So many times I have heard this used by the black community as a way of greeting, in conversation and in songs when black people refer to the black males. I have always seen this as a racist word and accepted that it was only okay for black people to use. Never has it occurred to me the negative connotations it holds and never have I questioned the use of it. Until now.

African-American slavery was a violent, race based system, controlled by white people. Looking at books written at the time of the slave trade and also when the discrimination was incredibly powerful, the words ‘nigger’ and ‘negro’ are used over and over again. There is nothing positive about this word at all. Yet we see it used so much in conversion and in music!

Rap artists are responsible for this in my opinion and the word ‘nigger’ is key in the glorification of the ‘thug life’ and gangs. It is used so much that I feel that even the black community do not understand the true meaning of the word and that no one has stopped and argued against it. We all continue to listen to the music and do not question the use of the words. But its time to get rid of it.
This gangster or thug lifestyle has been glorified by various black artists and passed down the generations. The lifestyle is associated with the ghettos, drugs and portrayed education as uninteresting and negative thing.

Artists have a responsibility to have a positive effect on people lives and yet they promote something so negative that they should not be seen as such positive role models. It is incredibly selfish of them that they are so absorbed with the money that they feel the only way they can continue to make money is if they promote the ‘thug’ lifestyle. Yet some rappers blame society for their negative start in life. Why? And isn’t it strange that even when they reach this level of fame they do nothing to get rid of the source of their negative upbringing and make sure that it is no longer a factor to stop the forthcoming generations.

Individuals such as Frederick Douglass, Martin Luther King and Rosa Parks, fought for the freedom of the black people in a society dominated by white racists. If they were to see rappers and young children using Nigger as a positive thing, would they be proud? I highly doubt it.

In 1963, Martin Luther King said in his famous speech, “one hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination.” What has changed from the day this speech was made? Yes there are now equal rights and the first black president of the United States, but the attitude within has not.

The slave trade should never be forgotten and should be used as a factor in order to unite people, not to create even more of a divide within society. The children that grow up in today’s society shouldn’t have this fear of being an outsider, because they want an education, or think that when they grow up there is only one path for them.

Some of you may be reading this and thinking I’m an idealist and that I’m a typical student trying to ‘save the world’, but that’s not the case at all. It is most likely that the word nigger will never stop being used, but we as a modern and equally society should try our best and at least think more about what we stand for.

I don’t feel comfortable with the thought of the generations that will follow to be sucked into this negativity and continue with this vicious cycle of events just because of one word that people use without thinking and base their imagine around and I’m sure that none of you do either.

HistoryPorn | Image | "AIDS Activists used ‘Die-Ins’ to demand attention to the growing epidemic. ACT UP protesters outside the FDA headquarters in Rockville, Maryland on October 11, 1988. They demanded the release of experimental medication for those living with HIV/AI. "

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